Restless Legs Syndrome, Niacin, and Web Search

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Until recently, Betty Zukov had Restless Legs Syndrome (RLS), whose main symptom is an irresistible urge to move your legs. It felt "like worms moving underneath your skin," she said. She is in her eighties. The problem started in her twenties and slowly worsened. It went up and down. When it was especially bad, she couldn't sit and watch TV. She couldn't go to a concert (she teaches singing) because she couldn't sit still. During the day it disappeared; in the middle of the night it was worst. Sleep was impossible. She had to get up every 30 minutes.

About ten years ago, the problem got so bad she saw a doctor. He prescribed Mirapex, a common treatment. It helped a lot. She felt groggy in the morning but was able to sleep through the night. In spite of the drug, however, the problem continued to get worse. In early 2009, she told Dennis Mangan, her son, "My legs are bothering me so much."

Dennis lives in Santa Rosa, California, near his mom, and works at a blood bank. He was familiar with the website DoctorYourself.com, run by Andrew Saul. The website is a guide to megavitamin therapy, which uses high doses of vitamins. Abram Hoffer, a Canadian psychiatrist who used niacin to treat schizophrenia, was an early advocate of such treatments. The most famous supporter has been Linus Pauling, who said high doses of Vitamin C cured many illnesses.

Saul recommended niacin for RLS. Apparently he got the idea from a letter he'd received. The letter said:

Just thought I'd let you know another great use for niacin -- restless leg syndrome. My husband has never been officially diagnosed, but has a lot of trouble sleeping. . . . It got so bad that I wasn't going to be able to sleep in the same room. Every few seconds, his legs would move and it was driving me up the wall. I persuaded my husband to try niacin with Vitamin C right before bedtime. Works like a charm, in fact when he missed his vitamins the other night, I could tell within minutes.

Saul added, "My own family members with the problem have tried this, and they no longer have restless legs."

This persuaded Dennis that his mom should try niacin. His belief that it would work wasn't high, but she was miserable. It was easy to convince her to try it. She started taking four 250-mg capsules/day, one at each meal and one before bedtime, a typical megavitamin-therapy dose. Within two days, her RLS was gone. She has kept taking niacin and her RLS has not returned.

The Recommended Daily Allowance for niacin is 20 mg/day. A serving of salmon might have 20 mg, so 1000 mg/day is much more than you could ever get from food. Most people who take that much will flush soon afterward. Yet only after taking 1000 mg/day for several months did Mrs. Zukov experience flushing. Apparently it took that long for her body to reach appropriate levels of niacin -- another indication she was seriously niacin-deficient. A National Institutes of Health website says that because niacin is water-soluble, "it is not stored in the body." This is a mistake. A large fraction of your body weight (two-thirds?) is water. A tiny fraction of that water is replaced each day. Vitamin C is water-soluble, yet it takes several months without Vitamin C to get scurvy. Folate is water-soluble, yet it takes several months without folate to show signs of deficiency. Perhaps Mrs. Zukov needed 40 mg/day but for a long time got 35 mg/day. For most of her life she had been a vegetarian, which may have had something to do with it; meat is a better source of niacin than vegetables.

Among thousands of RLS research papers, Dennis couldn't find even one about niacin treatment. We confirmed this. In May 2010, at PubMed we searched "restless legs syndrome AND niacin". It returned only one item: the article Dennis wrote about his mom's case for the journal Medical Hypotheses. A National Institutes of Health website says "RLS is generally a life-long condition for which there is no cure." According to the Mayo Clinic website, "In many cases, no known cause for restless legs syndrome exists. Researchers suspect the condition may be due to an imbalance of the brain chemical dopamine." Nothing is said about niacin.

About 5% of Americans have RLS. Could every case be due to lack of niacin? Maybe. Every case of scurvy turned out to be due to lack of Vitamin C. We already know that niacin deficiency can cause nervous-system problems. Maybe the moral is: You have more time to surf the Web about your problem than your doctor.

Further reading: Bruce Ames explains why megavitamin therapy makes sense.

Photo by williamcho / Creative Commons Attribution 2.0 Generic License.